Friday, November 4, 2011

In 1951, at the age of 30, an African-American woman named Henrietta Lacks died from an especially virulent form of cervical cancer, and the world of science and medical research was never the same again. When Henrietta Lacks visited her doctors at John’s Hopkins complaining that she felt “a knot growing on her womb” they were shocked to discover a form of cervical cancer they had never seen the likes of before. Though she received radical treatment, she soon died from her horrible affliction. But that’s only the beginning of the story, because although Henrietta left behind a husband and a handful of children, she also left behind the immortal cancer cells that would come to be known as the Hela cells. It’s not really clear if her family was tricked into allowing the doctors to take samples of her cancerous cells; but regardless of that fact, those cells have become some of the most important cells that have ever been harvested and have been aiding in the cures of many diseases. When author Rebecca Skloot decides to investigate the woman behind the cells, what she discovers will amaze, frighten and stupefy readers. For although doctors and researchers were getting rich off of Henrietta’s cells, her family was never compensated for them, and indeed never even educated about them. Most of her surviving family couldn’t even afford health care and were constantly mystified about the strange reports of the cells’ longevity and healing capacities. Long before they began to speak to Skloot, the family was living in fear and isolation, having been misdirected and exploited again and again. When the entire story of the cells and the family behind them is revealed, it’s one of shocking betrayals and strange science fiction like qualities. In this work of narrative nonfiction, Rebecca Skloot does the impossible and breaks through a barrier of grief, anger and resentment to tell the story of one woman and her incredible gift to the medical world — a gift that has tragically cost her family so very much.

When I was casting about looking for something to listen to on audio, I remembered that many readers had loved this book and that it had indeed earned a top spot on many “best of” lists. My good friend Sandy convinced me that audio was the way to go with this one, and so I set off with it, never knowing just how strange and compelling it was going to be. I found myself making up reasons to drop my print read and putter about the house trying to get more time with this incredible book that had me shaking my head in amazement and sorrow. It was a story I found incredible and that raised some frightening questions and suspicions in my mind, but at its heart this was a story of family. Be they broken or in bondage to wills outside their own, it was the story of the Lacks clan that really made the most impact on me. The audiobook was narrated by Cassandra Campbell with interludes of narration from Bahni Turpin. Both narrators did an amazing job, and Campbell in particular came off with just the right note of inquisitiveness and incredulity in her performance.

There were really two parts to this book. One part focused on the science behind the discovery of Henrietta’s cells and the other told the story of the Lacks family and the impact that these discoveries had on them. The cells in themselves were incredible, and it seemed, indestructible. They grew at an alarming rate and were so hardy and tenacious that they had the ability to grow even in places and ways they were not wanted. Medical men made millions off of these cells and they’ve been used in almost every form of medical research known in the world today. In the 50’s and 60’s the reports given to the public about these cells were not only misleading, but they had the cast of a bizarre Twilight Zone episode about them. News reports purported that the cells could create insidious life forms and clones, and read by a nation of unsavvy readers, the cells became sinister to some. The real truth was that these special cells, harvested from an unknown woman, were fast growing and useful for many different medical purposes in a way that none before them had ever been, and this in itself was a new phenomenon.

The part of the book that focused on Henrietta’s family was a decidedly less invigorating story. Henrietta was uneducated and married young. She had a philandering husband and a large group of children. The family and extended family were extremely poor, and when she was first diagnosed with the cancer that killed her, she was no stranger to health problems that were left untreated due to financial difficulties. Her treatment for cervical cancer was short-lived but intense, and by the time she died, her body was akin to a chemical dumping ground. It was heartbreaking to realize that she left behind children who were neglected and abused, but what happened after their eventual maturity bordered on the heinous. Henrietta’s family was never educated about the cells that the medical professionals took from her body. They never received any compensation for them, and even accolades came late in the game. Though all this caused a myriad of confusion and problems for the family, it was her daughter Deborah that took the emotional brunt of all this upheaval. Deborah’s story of ill-treatment and confusion broke my heart, for she seemed to suffer from an emotional cancer that mirrored her mother’s in its aggression, and Skloot’s eventual friendship and work with Deborah unveiled a world of confusion, helplessness and pain that the family was never able to recover from. I found it intensely wrong that the Lacks family could afford so little medical care when their matriarch’s cells were a gift that the medical community could never have done without.

Towards the end of this book, Skloot educates the reader a bit about tissue disposal and donation, and these sections had my blood boiling. A person has no rights to the medical refuse that they leave behind after a procedure or a blood draw, and these samples can be used for research and profit at the whim and will of those who collect it. Normally, I would have never been bothered by this, but after reading Henrietta’s story, this brought up frightening and untoward possibilities to my mind. Many have sued for the rights of their discarded tissues; readers of this book will be shocked to discover just how far these battles went and of their eventual outcome. The rational side of my mind says these things aren’t a big deal in the context of everyday life, but the emotional side of my personality needs only to look towards Henrietta and the legacy of suffering left to her children to tell me that this is indeed an important issue.

This book will probably make it to one of my top spots of the year. It had all the intrigue and mystery of a suspense thriller but with a much more complicated and muddied outcome. It was the kind of book you can’t help but talk about and bring up in every conversation. It was that good. If you haven’t read this book, I urge you to do so. Not only will it enlighten you in so many important ways, it will expose one more reader to a woman and family that deserve to be remembered and even celebrated. A highly original and impressive book, and very strongly recommended.

Heather,I am so glad you enjoyed this book. I think it was one of the best books I read last year. The author has a real skill in being able to communicate difficult science to the general public. Nice review!KathyMy review is here - http://bookdiary2010.blogspot.com/2010/09/immortal-life-of-henrietta-lacks.html

This book is on my TBR -- yours is one of many positive reviews of this book which sounds engrossing. I really love the mix of medical history and biography and that we 'meet' Lacks' descendents and family. Moving, heartbreaking, fascinating.

This book is not one of those books I'd seek out, but that point about medical refuse... that got my blood boiling too. I remember asking a hospital once about that when I had my son and they got all defensive about it. It's my body, why can't I ask or keep something that was taken out of it. It had to do with cord blood storage which never happened for numerous reasons.

Just reading your review had me in tears over this women's family! I pre-ordered this when it was first published and still haven't read it yet. It's time for me to change that. Thanks so much for such a compelling review.

I had a very cursory idea of what this book was about. I read some reviews when it was first published but it's been a while since then! I knew better that many readers raved about it. This book is on a list of books I will read one day but I wasn't in a big rush to read this book...that is, until I read your amazing and fascinating review! Wow, Heather and thank you! Thankk God for Rebecca Skloot bringing this story to light. I didn't know that doctor's etc. can take whatever tissue, blood & other stuff is left after a person has a procedure and do what they want with it. That's ludicrous and wrong! How sad that not one doctor, lab tech or person had the decency to go to Henrietta's family and tell tham what was going on.

Your review has me intensely interested in this book but also feeling so sad for Henrietta and even more for Deborah and very angry at the medical profession...overall they do see themselves as god-like.

Do you also recommend the audio like Sandy? I'd love to take a truck load of copies of this book and leave them all over the waiting rooms of hospitals...just to give people some awareness.

I have heard so many recommendations for this book but I still haven't read it. I will! I'm glad to hear that you recommend the audio, so that's what I will pick too. I was pretty shocked too that Henrietta's family never got any compensation for what the medical community did. Really sad!

This was an impressive book wasn't it? I got so caught up in all the different stories and issues. I listened to it on audio as well. Did you hear the interview with Skloot at the end of your version? When I heard her "real" voice, I was all disoriented as I was so used to Cassandra Campbell.

Wow. I've been wanting to get to this one for a long time but now I'm thinking I should swap out my paper version for the audio. Great review, Heather - I knew this one was good but you really gave me all of the reasons and got me thinking. I think this one needs to go on my book club's list for next year.

So good to know that the audio is as compelling as the print edition! I read this in print (for two book groups) and the discussions were long and involved.

Like you, I'm conflicted about the issues surrounding disposal of tissues after procedures. I'm an organ donor, and have had conversations w/my husband and others about the various check boxes ("use for medical procedure only" vs. "use in any capacity that will aid research" or something like that).

And, oh, the medical treatment that was described for Henrietta Lacks - a toxic waste site indeed!

I was much less taken with the book than other. Mostly I was thinking that Skloot was just as exploitative as the researchers. Maybe it was my own background and experience in genetics labs and so I wasn't particularly surprised by the science. Well written and worth the read but not on any of my "best-of" lists.

This sounds like a really interesting book and one I mean to read at some point. I do find it troubling how she forced the Lacks family to work with her when they didn't want to, but so many other parts too. Complex and interesting.